I was doing so well last week. I was so proud of myself for doing at least some of what I’ve committed to (the daily devotionals – I’ve had a total failure mode around podcasts, but a post on failure can wait for another day). I was telling myself that I was doing really well. Am I not such a balanced spiritual person? Am I not such a great activist? Am I not so good at being a disabled person in a disablist world? I thought that maybe the key was to keep telling myself that, keep thinking positive, keep ‘acting great’ to be great.
And then there was Orlando.
The day before yesterday, my friend messaged me to tell me about the vigil. I was desperate to go, but unlike many of the people who went (probably), I had to think very carefully about going. Every moment had to be planned – from getting there (can’t park in Soho – too scared to get buses at the moment), to being in the crowds (will I get scared and have a meltdown and be an embarrassment to myself and everyone with me?), to getting around Soho (terrible accessibility of streets and I don’t know if I have the energy for pushing myself around), to going home (will I be able to find a taxi?) A huge amount of spoons had to be measured out and used – see later in the post for what that means. Another wheelchair user passed me in the crowd at one point, said “I’m glad I’m not the only mad wheelie here”. I knew what she meant. I felt vulnerable and stressed out for the whole thing. That was helped immensely by my amazing friends who stood between me and the crowd, and helped me get around, and did lots to support me – I couldn’t have asked for more support. But there I was, thinking about myself. Fifty people had died and more had been injured… and I was worrying about my comfort.
Then, without giving myself a rest, yesterday I spent seven hours volunteering, and being in settings where my brain and body do not cope well. After the first five-hour meeting (hardly any breaks), I came home briefly and I so desperately wanted to go to bed. It was serious desperation – and the idea of being around people and having to behave like a neurotypical person in a meeting was terrifying. My body was screaming at me and my brain was already beginning to hit ‘shutdown’ territory (which happens to some neurodivergent people after a long time of fighting to appear neurotypical and wearing ourselves out). But I went out to the next two-hour plus meeting anyway, because I had said I would, and being true to my word is part of the virtue of Honour. But I had forgotten to take stock of quite how much things had affected me this week, including the attack and the vigil. I was seriously running low on spoons. And there I was, thinking about myself. Again.
Much better people than me have written about Orlando. People who are writing, and silenced, from within the Latinx LGBT community, like Vincent Cervantes, and people writing about being Muslim and queer at a time like this, like Amanullah De Sondy. People who have called for voices to be amplified that are not being heard, in the midst of the narrative-creating and the news biases and the many, many agendas. People like Mariella Mosthof and Ferdiad and Theo Wildcroft and Pat Mosley. I’m seeing many white LGBT people pondering intersectionality and privilege in the wake of this tragedy. It’s important stuff – lived social theory, social justice in writing.
It’s also not helping. To admit this is to demonstrate my horrendous privilege. I can actually sit in my comfortable house, with its decent security, and know that I’m probably not going to be attacked tomorrow (although the rate of disability hate crime is rising and I feel more unsafe every time I leave the house). I sit here as a white, rich person (and as a neurodivergent* person and a disabled person who seriously struggles with life, and doesn’t admit that enough). I am someone who will never worry about where my next meal is coming from (someone who has been told by doctors for ten years that I’m making up my illnesses, and recently found out I’ve been denied treatment for one condition for at least that long, as a result). I am someone who can afford to run my car and even the taxis I need to get around, to help me avoid the struggles that most disabled people face while out and about (someone who, on account of using a wheelchair, nonetheless has to plan life in exceptional detail, and who, on account of neurodiversity in an ableist world, doesn’t cope well with the execution of those plans). I am someone who lives in a country with an NHS and will never go hungry in order to pay medical bills (someone whose chronic illness regularly ruins my life and never, ever lets up – even when I ‘look’ OK). I am someone who can send my PA out into the world to do things, and thereby avoid some of the daily disablism and abuse, because I can afford a PA (someone who gets shouted at in the streets and often has to tell people to stop pushing my wheelchair without asking me because you might be about to break my fingers, not to mention taking away my agency and my right to attempt the hill on my own and also my right not to be grabbed by a bloody stranger).
I think my battles matter… to some extent. But I am struggling to balance my fear and exhaustion with my incredible privilege and my safety and my very comfortable life. It’s difficult. Those of us who have wide intersections in our lives between privilege and oppression sometimes struggle with this. It’s OK to admit it. But also, it isn’t.
I am not a queer Latinx. I am not a person of colour in the LGBT community. I am not living under US laws, with their bathroom segregation and removal of rights for trans people, or in US culture, with its violence towards my LGBT siblings (especially trans people). I am not a trans person on the American continent or in other countries, at high risk of being murdered, and at risk of having to survive via sex work in order to live and to pay for surgery (associated with even more risk of murder). I do not live in a country where it is illegal for me to be in a same-sex relationship. I do not live at a time when I could be sectioned or worse for being attracted to people of my sex or for being gender variant. There is so much I should be deeply grateful for.
But I am still writing a blog post about me, not about them, today. I am that person. I think that, today, I would rather admit it, than pretend to be better than I am.
It’s a fact I’m trying to take on board, that this tragedy has clearly affected us more than others (as an LGBTQI community) because it relates to us. It’s human to feel closer to our tribe than to the rest of humanity. It’s also deeply problematic.
Two metaphors: spoons and filters
Two metaphors are useful to talk about, at this point. ‘Spoons‘ are a metaphor widely used in the disability and chronic illness communities, to talk about measures of energy (or of coping skills, or similar). A lot of non-disabled people have at least enough spoons to get through the day. They may use one for a shower in the morning and one to make breakfast, but they still have two hundred left. In comparison, I may start the day with twenty. Then choices have to be made. Will I be able to make myself cups of tea today, or is it more important to be able to work? When I’m having a day with a few extra spoons, I may ‘look’ like I have as many as most people. But I’m still calculating in my head all the time. Do I have enough energy to buy the food that I’ve been asked to bring to the meeting, and still make it through the meeting? Do I have enough spoons to get myself lunch at the conference, or do I just have to sit here hungry so that I can get through the next talk without having to leave? Am I going to manage the whole of this event, or am I going to run out of spoons or the ability to act neurotypical, and have to run away (and be stared at as I leave oh gods please stop staring at me)?
The other useful metaphor is that of filters. I live my life filtering out my neurodiversity and its effects. I work hard every second of the day, using a lot of energy, thinking consciously about how to act in seminars and with supervisors and with friends and in meetings and in crowds and in pubs and in shops and on public transport. Imagine needing to think actively about every single thing you do, a mix of trying to get your brain to function in a world that you don’t fit into, and trying to act like it’s all unconscious and normal for you. Slowly, as I do more and more of this, and get more and more tired, my filters start to drop. You’ll begin to see more and more of the ‘real me’. You probably won’t like her – she’s irritating and unhelpful and gets a lot wrong.
Then the filters will fall away entirely. And then, collapse. Shutdown, or meltdown. A total giving up of brain (and body) that means nothing else is possible – literally – until I am out of ‘danger mode’ according to my neurological systems (which are far better at protecting me than I am).
Back to practice…
Last night, after the meetings were over, I did my daily devotional as planned. (I was too wired from ‘performing’ to sleep, anyway). I’ve been working with empty shrines, on the concept of stripping everything back, nothing left but myself and the Divine:
After all the fear and struggles of the past few days, the emptiness hit me.
I just sat there, at Her empty shrine, and sobbed. The candles burned down. Darkness came. I sat. I loved. I longed. I hated myself. I was afraid. I wrote poetry in my head. I sat. I didn’t wake my spouse. This was about me, and my goddess, and the darkness, and the silence, and the empty altars – and me, empty. I sat.
Lighten our darkness… and by thy great mercy defend us from all perils and dangers of this night.
For the night is dark, and I am far from home.
Soon I’ll start building up my shrines again. Starting with an ancestor shrine for the beloved dead of the Orlando shooting and of the many, many other terrorist attacks and state-sponsored violence going on around the world.
* * * * *
Here are two relevant stories that I’ve been pondering recently – told in my own words, so don’t trust their theological accuracy – they are very much my interpretations.
The One Found Sheep
A shepherd had a hundred sheep. He could always tell his own from the others in the fields — he knew their sound, their movement, their little ways. Every evening he took the measure of his sheep, and there they were, always a hundred of them. And then he could sleep as dusk came in, his shepherd’s crook curled around him, the sound of his sheep’s voices a constant in his dreams.
One evening he counted his sheep… and there were ninety-nine of them.
He panicked. Who is missing? Where are they? He searched the places that he could reach and still have his other sheep in sight, but the lost sheep was not there.
And so he left his fields, and left all the rest of his sheep, and went into the roads and out into the far edges of the country. And there he found it, lost in a ditch, unable to get itself unstuck.
And he carried it home.
– From the Christian tradition
The Myth of Sophia
Sophia was the first creation of the God. She was his Wisdom.
Her daughter, Sophia the younger, was beautiful, but she was not satisfied with her existence, nor with her heavenly consort the Christ. She looked down into the mortal realms and saw a great Light. She longed to be with it. “Why,” she said to the God, “can I not bring the world light and life, and create as you do?”
The God sighed a great, defeated sigh. “You are the child of Wisdom,” he says. “If you think it is wise, go, and create as I do.”
And so, enchanted by the world of matter, Sophia fell. And she created. But her first creations were born of chaos and darkness and fear. Her first son looked at the world and wanted to possess it – and he could not see that anything existed above him. From darkness he ruled the world. He denied wisdom to Adam and Eve.
But Divine Wisdom stayed with them.
The earth-bound Sophia could see that humanity was lost. She sent them the Serpent to teach them that they could think for themselves – but though they began to, they were already corrupted by the darkness and weighed down by the struggles of a corrupted world.
But Divine Wisdom stayed with them.
Unwilling to leave humanity alone, Sophia called on her mother, Sophia the Elder, to send the Christ, if he was willing to leave heaven and come to join her, to help this world and its people.
“And the Logos was made flesh, and dwelt among us.”
And Divine Wisdom stayed with them.
– From the Gnostic tradition
What if we are not always the sheep, but sometimes the shepherd?
What if we are sometimes Sophia, and sometimes the Christ?
What if we can only rescue ourselves?
And what if we don’t matter?
I have no conclusions. There is only silence, and the empty shrine.
Video: the Gay Men’s Chorus singing at the London vigil for Orlando. A wheelchair’s-eye view.
ETA: The list of the dead and injured in last weekend’s shooting. I’m sorry it took me so long to think to add this to my post. As the Wiccans say, what is remembered, lives.
*Neurodivergent: a non-medical term used by the community of people affected by autism/ADHD/dypraxia/dyslexia and many other neurologically-affected different ways of being. Those of us who think differently from the ‘neurotypical’ people. The world is full of neurodiversity. We are different, but not less.
 From the traditional night service of the Church of England.
 From the hymn ‘Lead Kindly Light’.